Patients with hidradenitis suppurativa who reported feelings of stigmatization due to their condition had poorer quality of life and higher levels of depression and social anxiety than those who did not report feelings of stigmatization.
The social impact of hidradenitis suppurativa (HS) may increase quality of life (QOL) burden and risk of adverse behavioral health outcomes in patients, according to study findings published in Dermatology Research Archives.
HS is characterized as a debilitating skin disease that can have a negative impact on the patient’s quality of life, even in a mild presentation. The painful nodules, abscesses and sinus tracts that affect HS patients can cause a significant psychosocial burden, the researchers noted.
In particular, feelings of stigmatization, defined as the awareness of devaluation, disrepute or social disapproval based on a brand or physical attribute, are of notable concern because they can generate feelings of shame and isolation in the patient for fear of a negative reaction.
“Although there are limited quantitative studies assessing feelings of stigmatization using an objective measure, feelings of stigmatization have been associated to be proportionally dependent on the clinical stage and location of the disease,” the study authors said. “Furthermore, the association between HS-related stigma and its relationship to psychiatric comorbidities and HS burden is limited.”
They conducted an observational study of 153 patients (n = 30 clinics; n = 123 emails) between June and September 2018 who had received a clinical diagnosis of HS from the Atrium Health Wake Forest Baptist Dermatology clinic within the past 5 years to assess stigmatization and its relationship with the patient’s quality of life, depression and social anxiety using objective tools. Of this cohort, 67 responses (response rate [RR]44%) (clinical, n = 27 [RR, 90%]; mail, n = 40 [RR, 33%]).
Participants completed the Dermatology Life Quality Index (DLQI) to assess skin-related quality of life; Patient Health Questionnaire 9 (PHQ-9), to assess depression; and the Brief Fear of Negative Evaluation (BFNE), to assess social anxiety. Increasing scores on the DLQI, PHQ-9, and BFNE correlate with poorer quality of life, increasing levels of depression, and social anxiety, respectively.
Participants also completed an adapted version of the Feelings of Stigmatization (FoS) survey to measure stigmatization, which is scored on a range of 0 (least stigmatization) to 155 (maximum stigmatization). Respondents were divided into 2 groups based on median FoS (72): high stigma (72 or more) and low stigma (less than 72).
The study cohort of respondents had a mean age of 39 years, 57% were African-American patients, and 90% were female patients. The mean stigma score was 74 and the median score was 72. FoS was shown to correlate (r) weakly with PHQ-9 (r = 0.42) and moderately with DLQI (r = 0.68). ) and BFNE (r = 0.51).
Findings indicated that participants in the high-stigma group were more likely to have worse QoL (18.1), higher levels of depression (11.1), and higher social anxiety (30.1) compared to their counterparts. low stigma (6.7, P < .001; 4.9, P < .001; 23.2, P < .001, respectively). No difference was shown in the severity of the disease according to FoS.
The limited response rate among the cohort was cited as a potential limitation of the study findings. Furthermore, although the FoS is a validated objective measure of stigmatization, it was originally intended for patients with psoriasis.
“Participants who felt more stigmatized were also more likely to have poorer quality of life, more social anxiety, and depression,” the study authors concluded. “A patient-centered, multidisciplinary approach to treating both physical and psychosocial aspects of HS may help decrease the burden of HS.”
Singh R, Kelly KA, Senthilnathan A, Feldman SR, Pichardo RO. Stigmatization, a social perception that can have a debilitating impact on patients with hidradenitis suppurativa: an observational study. Arco Dermatol Res. 2022;1-4. doi:10.1007/s00403-022-02412-5